“Taking care of yourself and living with HIV is a full-time job,” says Burns from ActionAIDS. “It’s still not an easy disease to have.”

Physicians agree that while newer antiretrovirals are less toxic than those developed at the beginning of what’s known as the HAART (Highly Active Antiretroviral Therapy) era, managing the virus remains a struggle.

“Better drugs are coming along, and now we have as easy as one regimen, three drugs in one tablet, and we’ll have more of those single-tablet regimens coming out,” says Ondercin. “But there are still side effects.”

Adds Powers, “Sometimes the meds’ side effects are as bad as the disease itself.”

Johns’ doctor says physicians can now mix and match 25 FDA-approved drugs to offer even patients harboring resistant virus virtually countless options, although he cautions that AIDS has become “a manageable disease that requires a lot of management.”

That’s something Johns can attest to.

“I would never choose this,” he says. “I have cancer. I take chemo. I have to take pills every day. A lot of days I feel like shit. I didn’t want HIV; I definitely wasn’t down. Thank God I’m tough. But it isn’t easy.”

Nor is it always smooth sailing for former ActionAIDS board member Dawna Edwards whose bright red-hued ’do gives her a sassy look. She’s been living with HIV for two decades. The 42-year-old North Philly native, now living in Germantown, learned she had the virus in perhaps the most agonizing way—by being told she’d passed it to her baby. Edwards’ son Joshua became ill two months after his 1989 birth, so she took him to St. Christopher’s Hospital for Children, then at Fifth and Lehigh.

“He wasn’t gaining weight, and he had a huge stomach but you could still see his ribs,” Edwards recalls while sitting in an ActionAIDS conference room. At St. Christopher’s, doctors conducted a battery of tests on Joshua before one of them approached Edwards and harrumphed. “Well, your son has AIDS and you probably have it too,’” and walked away.

“He didn’t have the greatest bedside manner,” she remembers wryly. Edwards, who also has a 22-year-old HIV-negative daughter named Amber, is certain she got HIV from Joshua’s father, a man she hasn’t seen since Joshua was 2. She’s also certain the man knew he had HIV before passing it to her.

“He and his mother used to tell me he had a blood condition, that’s why he took so much medication,” she says. “I felt hurt, betrayed, I wanted to fight, I wanted to hurt him.” Joshua died of AIDS five years ago. He was 15.

Edwards’ personal HIV trip has been a rollercoaster ride. In the early years she tired of having to take handfuls of pills at various times of day to the point where she stopped altogether. Today she gives herself twice-daily thigh injections but only has to take two pills. Although she suffers from unpredictable face and body rashes that her doctor treats with a steroid, she carries 150 pounds on her 5 foot 9 frame and says she has as much energy as she did before getting the virus.

She uses it to volunteer at Siloam, a ministry at 12th and Spring Garden streets, where she offers spiritual support to HIV-positive people and encourages young people to use condoms.

“I hand them out all over the place,” she says. “I run around a lot.”

Edwards says that she sometimes hears things that startle her.

“Years ago you had the horrible pictures of people with open sores and wasting away and everything,” she says. “But now you might see someone who has HIV and weighs 250 pounds and does everything everybody else does. So you hear people talking about it like it’s not really serious anymore.”

Edwards says she often hears young people, particularly in African-American neighborhoods wax nonchalant. “I constantly hear them say, ‘If I get it, it ain’t no thing,’” she says. “They say, ‘If I get it I’ll just go to the doctor and get a pill. I’ll be fine.’”

Although she’s never been stricken with any of AIDS’ hallmark opportunistic infections (OIs), Edwards got a scary reminder of the disease’s seriousness two years ago when she suddenly took ill, her weight plummeting to 105 and her T-cell count dropping to a mere 20 (uninfected adults typically maintain between 800 and 1,200 T-cells, the critical white blood cells HIV kills, per cubic milliliter of blood).

COMMENTS

Comments 1 - 8 of 8

1. drnusa said... on Dec 9, 2009 at 09:53AM

“Good timely article! I learned alot from it and it was well written I hope everyone reads it . I had some absolutely horrible and unforgettable experiences with AIDS many years ago as a medical intern. We gotta stop the spread of this virus!!!!”

2. Anonymous said... on Dec 9, 2009 at 11:41AM

“I am R. Vincent Johns, i just want to say thanks for doing this. People need to know we the infected look just like everyone else these days and please never let your guard down.”

3. Mom said... on Dec 9, 2009 at 03:20PM

“Robert you have always been a strong person you are a fighter much like your mother, you have always found a way to come out ok. Just know this I have always supported you even when you did'nt think I would or could. I may yell at frist but thats me. But I always come around. I have loved you from the second you were put in my arms March 26 1981@1104 pm. I will always be here for you.I love you my SON, Love Mama”

4. Christina said... on Dec 9, 2009 at 08:19PM

“Vincent, I think its great that your sharing your story.I remember the day you told me that you found out. It was right after i suggested that maybe you get tested for it because i thought that the scabs you had might have been a symptom of aids. And i remember you pulling me off to the side and you told me and up until that point i have never met anyone with aids and i felt really horrible because your such a great person and i never thought that it could happen to a friend of mine. But R.Vincent Johns, you will rise above it all... i know your strong and an extremely unique and strong willed individual. -nok-”

5. brother said... on Dec 9, 2009 at 08:56PM

“robert your one of if not the strongest person i know. i love and miss you. i know you will make it through all the hard times. you have done it time and time again. love ya big bro”

6. Anonymous said... on Dec 10, 2009 at 08:25AM

“Vinny Vin, I'm proud of you, there is nothing that comes at you in life that you don't overcome. I'm glad you're talking about this and making people aware. I hope people benefit from this article, you are a constant source of inspiration to me. <3 Vanny Van”

7. Friend of Team Gay said... on Dec 10, 2009 at 12:41PM

“Keep smiling, gorgeous!”

8. Cyd said... on Dec 10, 2009 at 01:34PM

“Thank you to everyone that shared their stories. It is important that people know more so they can do more to protect themselves and others.”

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